On 22 September 2015 a stakeholders’ meeting was held in Lilongwe, the capital of Malawi, organised by the Palliative Care Association of Malawi (PACAM) at the request of the International Children’s Palliative Care Network (ICPCN). The aim was to announce a project initiated by the ICPCN to train and mentor 18 health personnel from around the country in children’s palliative care and to obtain input and ensure maximum participation during delivery of the project. Guests included people from various key organisations from all over the country as well as the Ministry of Health.
“It was encouraging to see the level of enthusiasm, co-operation and support from all the stakeholders for this project,” said Busi Nkosi, Director of Advocacy for ICPCN.
The situation in Malawi
According to a UNAIDS 2013 report, half of Malawi’s population are children below the age of 18 and about 170,000 children aged 0 to 14 are living with HIV, with only half having access to antiretroviral drugs. The report also reveals that approximately half of the children diagnosed with cancer require end-of-life care, either at diagnosis or at the time of recurrence.
At present there is only one specialised paediatric palliative care clinic which can be found at the south end of Malawi, at Queen Elizabeth Central Hospital in Blantyre.
General paediatric palliative care services are available in three central hospitals but there is none at district and health centre levels. In the past five years 65 health care workers were trained in children’s palliative care with financial aid from the UK Department for International Development (DFID) for the HtH and ICPCN Two Country Project.
“These are the main personnel providing children’s palliative care (CPC) at the central hospitals and to date they have cared for about 3000 children since their training,” explains Busi Nkosi.
“ICPCN identified the need to extend the service to other children who require palliative care and their families and to train more health care workers in children’s palliative care. Funding for this has been generously provided by the Open Society Institute for Southern Africa (OSISA) and will see18 more key health personnel trained and mentored in CPC.”
Initially, in order to assess the level of impact the project will make, a baseline survey will be carried out accompanied by the sensitisation of officials from the Ministry of Health.
UModzi, the CPC specialist clinic, housed at Queen Elizabeth Hospital in Blantyre, will provide clinical experience for those health professionals involved in the project. It is hoped that after they complete the course, CPC cover will extend to even the most remote areas of Malawi.
Important information that will help to match service to the need would be a study to determine the real need for children’s palliative care in Malawi. Busi is hopeful that PACAM will find a donor willing to undertake this activity in the future.